We all know — or we should all know — that lung cancer is one of the biggest killers in our society. With an estimated average of 433 people dying every day from some form of this disease, there is no question as to why it is considered such a horrifying diagnosis. Lung cancer kills more than any other cancer, and more than its three closest competitors in the cancer arena combined. If there were cancer cage matches, lung cancer would win virtually every time based on the sheer volume of its devastation and mayhem. Yet, in spite of receiving only a fraction of the research funding that other cancers get, a surprising number of treatments have emerged to help lung cancer patients outlive their initial prognosis.

But you have lung cancer! You’re expected to die. And, by the way, you’re expected to die quickly (and brutally). That is what the common narrative tells us.

Lung cancer treatment has made amazing bounds over the past decade. For a growing number of patients, living with Stage IV lung cancer is no longer an immediate death sentence, if a death sentence at all. For some of them, especially those diagnosed “earlier” in the Stage IV spectrum, while there are still a few months to alternate between treatments to find what works, or for those lucky enough to have an actionable mutation, even this advanced type of lung cancer can be treated as a chronic illness instead of a fatal one. Earlier and better diagnoses have led to younger and healthier patients having a chance to engage in this challenge before their cancer has beaten them down from within, and they have brought a new level of perseverance to the process.

And yet, the disease still wins most often in the end, if winning were something that cancer cared about; cancers are not conscious, they don’t “care” about anything, they often exist simply by chance and continue to exist because they happened to freakishly evolve to survive any given treatment not because they wanted to, but because their broken DNA continues to break and they continue to grow. So, most often, and for lack of a better metaphor, the cancer wins out, the patient dies. 433 of us each day. That is what is expected. That is what the narrative tells us and we are a story-driven species, after all.

And we don’t much like things that don’t fit the stories we understand.

So it is no surprise that people often don’t know what to do when they encounter a lung cancer patient who continues to look good and appears to be thriving under treatment.

After a while, a patient is likely to stop talking about his or her treatment; it gets tiresome, that same old story: there is suffering, there are good times, there is this or that side-effect to deal with, but I’m still here! People don’t know what to make of it. You should be dead, after all. You should be dead. You promised us death. It gets awkward. We become quiet.

We might even feel inconvenient. We haven’t played into expectations. So we must be cured, the disease discarded, something to be forgotten about and locked away from discussion — but a managed disease, complete with daily struggles, constant, looming anxiety, isn’t ever really gone. It remains a vital and important part of a patient’s life. It is inescapable. But that is hard for most people to process. Because in their minds, we keep telling them that we are about to go away, but we remain.

The real cancer narrative has been evolving for a long time, but the commonly accepted narrative has barely changed in decades. People resist change in the narratives through which they define their existence, through the sheer force of confirmation bias or the innate need for comfort or maybe just because our DNA is hardwired that way. But we need to change this common cancer narrative, to update it for the 21st Century. Stigma still lingers over the very diagnosis of lung cancer, quietly pushing it into the shadows, causing patients to feel shame for a disease they never deserved. And that stigma prevents funding, it denies research, it causes more and more death.

Lung cancer is not just the domain of old smokers. It is not just the domain of frail, toxic bodies gasping through a few last months of life.

There are more of us now, more every day: the inconvenient friends and co-workers and family members who just won’t go away like we were expected to. And it can be hard to embrace that, certainly; there is the constant, nagging worry, the anxiety around every new scan, the fears that each moment’s stability is temporary. It’s hard to get used to us.

But we plan to stick around.

Yeah, no one really wants to feel like they’re being that guy…

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